TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Caregiver’

Caregivers SPEAK OUT: . . . Author, Abby Maslin

Caregivers SPEAK OUT: Author, Abby Maslin

presented by

Donna O’Donnell Figurski – author

Prisoners without Bars: A Caregiver’s Tale

 

Caregiver, Abby Maslin – author of “Love You Hard”

 

 

1. What is your name? (last name optional)

Abby Maslin

2. Where do you live? (city and/or state and/or country) Email? (optional)

Washington, DC, USA

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

My husband, TC, is the TBI (traumatic brain injury) survivor. He was 29 at the time of the assault that caused his injury.

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I became my husband’s full-time caregiver on August 18, 2012. I had just celebrated my 30th birthday.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

I had a 21-month-old son, named Jack, whom I was also caring for at the time.

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

I was employed as a fourth-grade teacher. TC’s injury occurred the weekend before school started. I was not able to return to work for a year.

7. Did you have any help? If so, what kind and for how long?

We had family members who lived nearby and who offered intermittent help. My parents were both ill, however, and unable to help in any large capacity.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

Immediately. It began as I was tasked with advocating for TC’s medical care.

9. Was your survivor in a coma? If so, what did you do during that time?

Yes. TC was in a deep coma for about four days, but he took more than two weeks to fully come out of it.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

Yes. TC received all the therapies: speech, occupational, and physical. He received occupational and physical therapies for about one year. He received speech for more than two years.

Love You Hard by Abby Maslin

11. What problems or disabilities of your brain-injury survivor required your care, if any?

TC had severe aphasia (struggles with both expressive and receptive language). He had physical weakness on one side of his body and needed to relearn how to walk. He continues to have limited use of his right hand.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

It’s really impossible to compare. My life since becoming a caregiver is far more complex and difficult. It’s required a lot of emotional growth and healing to let go of the life I had and the relationship I once shared with my spouse. This new life, however, is far richer in purpose and gratitude than it was before. I have a clearer sense of who I am, what I’m capable of, and how I want to spend my time on earth.

13. What do you miss the most from pre-brain-injury life?

I miss the sense of safety I once felt. I miss the easy conversation my husband and I once shared. (His aphasia makes communication much more effortful.)

14. What do you enjoy most in post-brain-injury life?

I enjoy the sense of gratitude I live with daily. I can identify and reflect on my blessings with clarity. It’s a wonderful thing to appreciate life as it’s happening.

15. What do you like least about brain injury?

The unpredictability. As a caregiver, I find that it’s difficult to align one’s expectations to the recovery of a loved one, as everything is always in flux and changing.

16. Has anything helped you to accept your survivor’s brain injury?

What’s helped me is the recognition that suffering is universal. My family and I were never exempt from life’s challenges and normalizing that experience of hardship has helped me make peace with its existence.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Absolutely. While my husband’s personality is mostly unchanged, there are subtle changes that have required us to relearn each other as people. It has shifted the dynamics of responsibility and roles in the household.

18. Has your social life been altered or changed and, if so, how?

Yes, at first. But, we were fortunate to have many friends who stuck out the recovery process with us and with whom we still socialize. We are not as social as before, but we also have two young children these days.

19. What are your plans? What do you expect/hope to be doing ten years from now?

Praying for continued good health. TC has wonderful healthy habits, but we can’t control the aging process. If all goes well, in ten years, we’ll still be working and living at home with a 14-year-old daughter and a 20-year-old son at college!

Caregiver, Abby Maslin – author of “Love You Hard”

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

Be forgiving of yourself and your own process of grief. It cannot be rushed. The hand you’ve been dealt is a terribly unfair one, and it is OK to acknowledge the gravity of that fact. Life with brain injury requires persistence, patience, and a lot of hope, but life can be as beautiful and as rich as before.

 

Stay Safe and Healthy!

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COVID-19: Love in the Time of a Pandemic

COVID-19: Love in the Time of a Pandemic

by

Columbia University Professor Emeritus, Dr. David Figurski

presented by

Donna O’Donnell Figurski

(Disclaimer: The World Health Organization <WHO> has officially named the new coronavirus as SARS-CoV-2 and the disease it causes as COVID-19.  Because the majority of people, including much of the press, commonly refer to the virus as “COVID-19,” to avoid confusion I use COVID-19 as the name of the virus in these posts.)

David H. Figurski, Ph.D & Survivor of Brain Injury

Donna and I recently celebrated 51 years of marriage.  We chose the beautiful desert scenery around the White Tank Mountains near our home in Arizona.  We returned to the place that Donna proposed to me last year as part of our 50th anniversary celebration.

This year, our anniversary celebration was very different.  We are in the middle of a global pandemic of a new coronavirus.  To slow the spread of this highly contagious virus, most people wear masks, practice social-distancing, and self-quarantine.  (For us, except for monthly food pick-up runs, we have been home over 160 days.)

Desert near the White Tank Mountains

The effect of the pandemic has been horrific and devastating for society, most notably for health-care personnel, blue-collar workers, teachers and school administrators, and middle- and lower-class families, who are struggling with paying bills, having enough food, and eviction.

Donna & David Figurski Wedding Anniversary #51

Globally, there have been over 22.5 million confirmed cases of COVID-19, and over 795,000 people have died. The U.S. has over 5.5 million cases and over 175,000 deaths. Scientists and physicians around the world are racing to understand the virus and its disease.  A viable vaccine is months away.

David & Donna Figurski – so happy together

Everyone is trying to cope as best as he or she can. On a personal level, Donna and I are fortunate to deeply love one another and to have each other in the midst of such chaos.

Love is worth celebrating wherever and whenever you can.

Stay Safe and Healthy!

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Read All About It! . . . . . . . . Prisoners without Bars: A Caregiver’s Tale

Read All About It!

Prisoners without Bars: A Caregiver’s Tale

presented by

Donna O’Donnell Figurski – author

Donna & David with ARC of Prisoners without Bars: A Caregiver’s Tale

 

My memoir, Prisoners without Bars: A Caregiver’s Tale, is not only a story of David’s and my struggles after his traumatic brain injury, but it is also a love story. Though my memoir addresses a dire topic, it is peppered with comedic situations. They say laughter is the best medicine, and again, they are right.

Prisoners without Bars is a heart-wrenching memoir that will make you laugh, cry, and G-A-S-P. I promise!

 

Boy Laughing

 

Girl Crying girl-crying-clipart-34

Girl Gasping 2

It’s not a beach read, but it reads like one. It’s fast! It’s easy! It’s fascineasy. I mean fascinating.

What Readers are Saying!

Jackie said – “A beautiful and touching story.”

Anonymous Amazon Customer said – “I loved this book. almost couldn’t put it down.

jlgwriter said – “I found the story powerful and compelling.

Todd & Kim said – “This is such an inspirational story of survival! The book is a very easy read and informative as well as inspiring!!”

Judy said – “Donna O’Donnell Figurski tells her story of grace, love, frustration, anger, disappointment, strength, joy, and above all hope.”

Marge said – “I read it in one fell swoop… I guess the word that would describe your book, your life, and who you are is SUPERCALIFRAGILISTICEXPIALIDOCIOIUS.”

Anonymous said – “This book pulled me in immediately and didn’t let me go until the end! ”

Helen said – “Could not put this book down. Written for easy reading. It was like having a conversation with a friend.” “I finished it in one day with some teary moments along with some chuckles. A must read!!”

Get Your Copy Now

Read It!               Review It!

Click Links under Book

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PAPERBACK!        Read it Now!                              e-BOOK!      Read it Now!

 

Stay Safe and Healthy!

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Sneak Peeks for Prisoners – Audio Book Coming Soon

Coming SOON!

Prisoners without Bars: A Caregiver’s Tale – released soon as an audio book.

Prisoners without Bars: A Caregiver’s Tale, a memoir by Donna O’Donnell Figurski, is a heart-wrenching love story that will make readers laugh, cry, and G-A-S-P!

When my husband and best friend, David, had a traumatic brain injury in January 2005, it sent us down the rabbit hole. David’s neurosurgeon gave David a 1/600% chance of survival. David had two more brain surgeries after his first and again, he defied all odds. He lived!

Listen to the excerpt to see how it all started.
You can easily find my book on any of the following places.

Amazon

Barnes and Noble

IndieBound

Goodreads

Just click the links.  You can actually review it and rate it on Goodreads. Did you know that reviews and ratings are the life blood of books? Reviews and ratings help to keep books alive and they may even get to the bestseller list. So, PLEASE write a review and rate Prisoners. It can be short.

Learn more about me at donnafigurski.com

Please leave a comment/question. I will respond.

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Survivors SPEAK OUT! . . . Thomas Hopkins, Jr (Tommy)

Survivors SPEAK OUT! . . . Thomas Hopkins, Jr (Tommy)

presented

by Donna O’Donnell Figurski

Tommy Hopkins, Jr Survivor of Brain Injury

 

 

1. What is your name? (last name optional)

Thomas Hopkins, Jr.

2. Where do you live? (city and/or state and/or country) Email (optional)

Mountain Home, Idaho, USA (originally from Wisconsin)

3. On what date did you have your brain injury? At what age?

I was 19 years old.

4. How did your brain injury occur?

I have had several head traumas that led to my brain injuries. I’ll discuss the main ones. I have two injuries from February 2003. The first was due to a JDAM bomb (Joint Direct Attack Munition – a guidance kit that converts unguided bombs into all-weather precision-guided munitions). The second was from an explosion in a unit I was working with. In 2006, on my 4th tour, I had gotten a hammer to the head. I do not recall this incident at all. My fourth injury was in May 2007. I was still on my 4th tour. Our camp got morning RPG/mortar hits. The shop I was working in had one hit close by that shook the shop. The 40-lb. equipment I was working on fell over and hit me in the back of the head.

5. When did you (or someone) first realize you had a problem?

I started noticing issues after my first injury back in 2003 – daily headaches, ringing in my ears, light sensitivity, plus I would invert numbers.

6. What kind of emergency treatment, if any, did you have?

Due to the units I was in, I did not get treatment. I’ll rephrase that – due to the units I was part of, unless you lost a limb, your sight, etc. or your life was in danger, you were not allowed to seek medical treatment.

7. Were you in a coma? If so, how long?

No coma

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I started seeking help once I got out of the army. I started at the VA (medical care at hospitals of the Veterans Administration). It was not the best outcome.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

I have convergence insufficiency (a condition in which your eyes are unable to work together when looking at nearby objects, creating double or blurred vision),

photophobia, daily headaches that turn into migraines, and constant tinnitus. One doctor said I have damage to the autonomic and limbic systems in my brain. Other doctors have said that I don’t even have a brain injury! (LOL) I have no concept of time; I experience jerks (involuntary muscle movements); I search for words; my speech is slurred; my brain often won’t let me get my words out; and I have a poor memory. I do not feel 60+% of my body, and my lower limbs do not work a lot of the time. “Partial Para” is what they call it. At times, I need to be in a wheelchair.

10. How has your life changed? Is it better? Is it worse?

Worse

11. What do you miss the most from your pre-brain-injury life?

I miss my memory. It used to be photographic.

12. What do you enjoy most in your post-brain-injury life?

Retirement (LOL) … Driving my wife nuts (LOL) … Um, working my brain in different ways to work on problems and situations that come up in my hobbies

13. What do you like least about your brain injury?

I’m not Johnny-on-the-spot anymore. I miss my memory. My body is going to shit.

14. Has anything helped you to accept your brain injury?

MY WIFE. Even though most of my injury is “invisible,” she showed me that I also have physical scars that I and others can see.

15. Has your injury affected your home life and relationships and, if so, how?

Yup. That’s a very long answer.

16. Has your social life been altered or changed and, if so, how?

Yup. We lost a lot of friends and family because I was not the same Tommy I was before I was brain-injured in the war.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

Tommy Hopkins, Jr. Brain Injury Survivor
Caregiver – Kristina Hopkins

MY WIFE! I have a rough idea of some of what she does for me, but I have no clue of what all she does.

18. What are your plans? What do you expect/hope to be doing ten years from now?

My “plan” is to maintain what I have and live each day as if it is my last.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Yes. You have to adapt to your new self. That old person is gone. I had to realize I will never be as I once was, BUT I am still able to do most things with adaptation.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

My advice: Good days come and go. Work with the day you have because you don’t know what tomorrow will bring.

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(Photos compliments of contributor.)

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Past Blast – TBI TALES . . . . . . What’s Really Important

What’s Really Important

(previously published on February 14, 2015)

 by

 Kayla Bradberry Knight

(presented by Donna O’Donnell Figurski)

 

Kayla Bradberry KnightLast year on February 13, my husband, Wyatt, took me out for a Valentine’s Day dinner. He and the kids gave me cards that morning. I was on cloud nine. Who would have thought that five days later my husband would be fighting for his life and our families would be turned upside down?valentine-s-day-clip-art

God has taught me many lessons this year. Most of all, I’ve learned that earthly possessions mean nothing. Sure, they make one happy for a while. But no gift, flower bouquet, or box of chocolates could take the place of what I have today. My husband is still here! Oh, how happy it makes me to be able to say that!

He may not realize that it’s even Valentine’s Day. Nor will he walk through the door with a gift, BUT I still get to hug him. The kids and I still get to tell him how much we love him. That, my friends, is irreplaceable. Don’t just sign that sweet card or have those beautiful flowers delivered. Show that person how much he or she means…not just today, but every day!Love Every Day

 

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at donnaodonnellfigurski@gmail.com. I will publish as many stories as I can.

 

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Caregivers SPEAK OUT! Bill Duwe

Caregivers SPEAK OUT!

Bill Duwe  (caregiver for his son)

presented by

Donna O’Donnell Figurski

Bill Duwe Caregiver

Bill Duwe – Caregiver for son, Ray

 

1. What is your name? (last name optional)

Bill Duwe

2. Where do you live? (city and/or state and/or country) Email? (optional)

Broken Arrow, Oklahoma, USA     wduwe@cox.net

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

I am Ray’s father. He was 34 when he suffered a brain-stem contusion in a motor-vehicle accident.

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

Ray was released from the hospital on January 27, 2001. We shared caregiving with his wife until November 2001, when Ray moved to our house. My wife and I have been his main caregivers since November 2001. I was 60 years old.

Bill Duwe Wife &amp; Son Ray IMG_6570 (2)

Bill Duwe and his wife – Caregivers for son, Ray

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No, but my wife’s mother was requiring some assistance. Eventually, we were caring for her and Ray in our home. She passed away in 2007.

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

Yes, I was employed. My employer helped by allowing me to work from home a day or two a week. I worked for 2½ more years. Then it seemed better for me to retire.

7. Did you have any help? If so, what kind and for how long?

Absolutely! Currently, I have eighteen volunteers who help with stretching exercises for Ray. I trained these volunteers. We exercise Ray twice a day on a physical therapy table. For seven of those exercise times each week, a volunteer comes to help. Exercise takes about 45 minutes. Some volunteers come once every week; some, twice a month; and some, once every two months – depending on their availability. This does wonders for everyone’s morale – my wife, Ray, the volunteers, and I are all uplifted in spirit.Volunteers

In addition, I employ a nurse for two hours to bathe, give medicines, help dress, and help exercise Ray twice a week. My wife will have knee-replacement surgery next month, so we will employ this nurse two hours a day, six days a week, during my wife’s recovery. Two of Ray’s children will also come to help us during her recovery.

8.When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

We received ten days of family training on the rehab floor of the hospital before they released Ray. They trained us in physical therapy, occupational therapy, speech therapy, and all daily care. We did most of his care during those ten days.

9.Was your survivor in a coma? If so, what did you do during that time?

Ray was in a deep coma. He did not respond in any way for one month. He partially opened his eyes exactly one month after the injury. We camped in the waiting room day and night. We took turns going home at night for a shower and an occasional night of sleep at home.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

Ray received inpatient therapy during the ten days of family training. After he was released from the hospital, we were able to get various periods of outpatient or home-health therapy for a few years. We have always been directly involved in any therapy.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

Ray is a non-verbal quadriplegic. He requires complete 24-hour care. Ray’s ability to communicate is very limited. Frequently he can close his eyes for “Yes.” Sometimes he can shake his head for “No.” Occasionally he can smile, but the heavy doses of seizure medications have dulled his ability to show emotion.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

There have been significant adjustments to our daily life. We made major accessibility accommodations. We have a wheelchair-van. We built a custom accessible home. I would not say life is better or worse. We learned how to adapt. We travel extensively – road trips and cruises. We are able to do what we want – it just takes extra planning and effort. We enjoy going to church, eating out, etc. Ray goes with us. Many of Ray’s friends have connected with us. Ray’s children are close to Ray and us.

13. What do you miss the most from pre-brain-injury life?

We very much miss the old Ray.

14. What do you enjoy most in post-brain-injury life?

It has provided opportunities to connect with and appreciate Ray’s friends. We enjoy sharing our experiences with other caregivers and friends we make in our travels and with therapy students.

15. What do you like least about brain injury?

The devastation to the survivor and his family

87747316. Has anything helped you to accept your survivor’s brain injury?

Ray’s demeanor indicates he has accepted his injury. Knowing he accepts it helps us accept it.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Our marriage is strong. Unfortunately, Ray’s marriage did not survive. Ray’s children are close to Ray and ready to help when needed. We may be closer to his children than we would have been otherwise.

18. Has your social life been altered or changed and, if so, how?

We seldom attend church-class parties in a home because it is difficult, or impossible, to get Ray into most homes. Otherwise, we have an active social life. My wife and I each have social activities we attend individually.

19. What are your plans? What do you expect/hope to be doing ten years from now?

In ten years, I will be 87. I expect to still be taking care of Ray in our home. I may need more help, but who knows? My health is good. I expect Ray, my wife, and I will be traveling.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

  • Make the effort to find support, and work to keep support.
  • Take care of yourself and your life.
  • Remember, you know your survivor’s medical history better than any doctor does. Use your knowledge to help the doctor. (For instance, scar tissue in Ray’s lungs may be misinterpreted as pneumonia on an X-ray.)
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“We Still Have Him to Love” by Bill Duwe

 

 

I have written a book, “We Still Have Him to Love” by Bill Duwe. I wrote it to help other caregivers. It is available on Amazon.com.

 

 

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New NEWS: . . . . . . . 2019 Caregiving Visionary Award Finalist

New News:    2019 Caregiving Visionary Award Finalist

presented by

Donna O’Donnell Figurski

th-1YAY! I am one of ten finalists for the 2019 Caregiving Visionary caregiver-word-clipart-1Award, so I’m still in the running. A great big THANK YOU to all who voted for me. Your votes helped immensely. YOU made this happen and I am so honored to be a finalist. Winners will be announced March 1st.

Thank you! Thank you! Thank you! THANK YOU!

 

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SPEAK OUT! NewsBit . . . . . . VOTE for Me! – Caregiver Visionary Award

VOTE for Me! – Caregiver Visionary Award

presented by

Donna O’Donnell Figurski

This is just an itty-bitty, tiny-teeny, itsy-bitsy newsletter because I want to share some exciting news with you.

I have been nominated for the “Caregiver Visionary Award,” which will honor five th-1caregivers who stand out in their caregiver world. Now frankly, I think all caregivers deserve this award, but, alas, only five will be chosen, and I hope I am one of them. David thinks I should be too. He nominated me.

I need your help. Only you can make this happen. Here’s how it works. In order to be chosen as one of the top ten finalists, I need votes. Internet votes! That’s it. Pretty easy. All you have to do is click on the link I posted below.

https://www.caregiving.com/ncc19/cva-donna-odonnell-figurski/

Voting ends at Midnight ET on February 25, 2019. So please HURRY!

Scroll to the end of my nomination.
Click on “Cast your vote.”
Takes you to a new page
Lists all nomineesplease-vote
Mark my name, Donna O’Donnell Figurski.
Click “VOTE!

See, that wasn’t so hard, was it?

On March 1, 2019, the winners will be announced. You’ll probably know right away because you will hear me squealing and jumping for joy. And now, I am going to cross my fingers until March 1st. pco5aerzi

ashdis kjdihio jsh pogwkp d wyqye. Oops! It’s really hard to type with crossed fingers.

Translation : Thank you so much from the bottom of my heart!

P.S. Phew! Thank goodness that’s done. I hate to ask for things!

 

(Clip Art compliments of Bing.)

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Past Blast: Mansion Dancing Under the Stars

“TBI Tales: Mansion Dancing Under the Stars”

(originally published April 26, 2014)

presented by

Donna O’Donnell Figurski

mansion-at-westport

David and I met on the dance floor when I was 16 years old. He was 17. We fell in love under a strobe light. Through our married years, we danced at weddings and at parties, but when David’s Traumatic Brain Injury left his body as limp as Raggedy Andy, I never dreamed that David and I would ever dance again. But, during a recent trip to Westport, Massachusetts, to spend time with our son, Jared, his fiancé, Emily, and her family, we found ourselves staying in a mansion … only feet from the Atlantic Ocean. Our host, dancers-thSusan, was beyond gracious, concerned about our every comfort. On our second night there, she threw a big family party on her extensive patio and even more expansive grounds overlooking the ocean; and she invited us. We stopped in about midnight.

The partygoers were huddled around the fire-ring … music still blaring. Jared and Emily began to dance on the patio. I swayed. David sat in a tall patio chair. Then the unthinkable happened. David asked me to dance. I hadn’t expected that! David can barely walk – dancing had not been on his radar for more than seven years. I looked at him expectantly. Was he kidding, being facetious? ballroom_dancing_stars_swinging_lg_clrNo! With a huge grin, I answered, “Yes!”

We didn’t Cha-Cha or Swing, as we had learned in our Ballroom Dance classes. We didn’t attempt the Fox Trot, or even the Waltz, though Paula, our dance instructor after David had his TBI (another story), would have been proud of us if we had. But, we did our own dance. We swayed back and forth – never moving our feet. We call it the “TBI Sway.” We swayed with my head resting against David’s shoulder and his hand gently placed at the small of my back. We swayed with David holding on to me for dear life … for balance. We danced under the stars to an old favorite, “Unchained Melody” by The Righteous Brothers, with the sounds of ocean waves lapping the shore, with smiles on our lips, and remembrances of days gone by … and the promise of our days ahead.dance under stars

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